Archive for the ‘Functioning at Home’ Category

Living with Ehlers-Danlos Syndrome – Safety Tips

Posted on December 5, 2016

By Ellen Lenox Smith
Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe. In this article, Ellen shares some safety tips that she hopes will help others with EDS.

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Support For Friends of Hypermobiles/ EDSers

Posted on June 9, 2015

    A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _   If you meet these requirements you can join at NOTE: no EDSers will be admitted to the group, it is for support people only so that […]

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Carrie is Honored for Ehlers-Danlos Caregiving

Posted on August 5, 2014

EDS caregiver, Carrie Brazier, has been nominated for an award recognizing positive role models – the “Young People of the Year” (YOPEY) award.  “She is very selfless and puts everybody else first. If she was not here I could not function,” says her proud EDS mom. By Victoria West. “A carer who has helped raise money for […]

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Living with Joint Hypermobility While Reducing and Preventing Pain

Posted on June 1, 2014

By Dr. Brad Tinkle – Medical Director of Clinical Genetics at Advocate Children’s Hospital. EDS expert, Dr. Brad Tinkle, shares his recommendations for managing Ehlers-Danlos Syndrome. Joint hypermobility is common condition like being taller or shorter than average. Obviously, some people have more mobile joints than others and this can depend on gender, age, ethnic background, and […]

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Listen to Radio Talk Show on “EDS Pain Management”

Posted on September 14, 2013

EDS Awareness was invited to participate in Radio talk show about EDS Pain Management. It aired on Monday night, 7/22/2013. (Click on the title above to listen to a replay of the interview.)  You will also learn about the EDS Awareness Support Group program. Click here  to listen to the radio show (after commercial). Enjoy the program. We appreciate your Likes […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

Posted on June 21, 2013

Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle.  BBC  News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience.  We hope this will increase awareness & understanding of  the compromises we EDSers must make to manage Ehlers-Danlos […]

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12 Ways to Help a Nauseous or Unhappy EDS Stomach

Posted on June 5, 2013

by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]

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Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
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